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Our First Terrifying/Exciting Visit   

 August 26, 2005

       It’s my wife’s and my 8^th wedding anniversary. We have our first appointment with the Cleveland Clinic in Cleveland, Ohio. I am being evaluated for a double lung transplant. I am 48 years old. My daughter, Mikaela is five years old now. She was extremely excited as she was going to spend the next two days at her grandparents’ home and she got to pack her own Disney Princesses suitcase. She has no clue what is happening with her daddy, for her it is an adventure to her grandparents. At five years old that’s exactly what she should think of these next two days, for me it is much, much more.

      My insurance will only allow me to have the transplant in Cleveland as opposed to Pittsburgh where most of the potential lung transplant patients from Buffalo go. At this point in my CF life I had no other options, as I was doing everything I could do to stay healthy and alive, and although I don’t believe I’m at the point of transplant yet, my doctors in Buffalo know it is only a matter of time and want me to be ready when the time for transplant comes.

      I really don’t know what to expect, because really most of the doctors and PA’s have either never been to Cleveland Clinic or have not spent much time there and don’t really know what to tell me about the place, just that it is in Cleveland, it is highly regarded as a leading center for lung and heart transplants and well…it was the only place that would accept my insurance that was within approximately a 500 mile radius of Buffalo.
As we drive on the I-90 Thruway toward Cleveland I honestly feel sick to my stomach. I know my life will be changed by this visit. I will either be accepted into their lung transplant program in which case at some point in the near future I will be transplanted and could potentially live a much more normal, happier life or I will be denied and will go home to slowly die like so many before me have in this situation. This is a time I have been hoping for and dreading too. It is a case of life or death, and it is not a story in a book or movie, it is my life.